Madilyn Rae Lens

Madilyn Rae LensBorn 10/19/2012

Heather Lens

After a day of labor, Madilyn finally decided to grace us with her presence.

Once it was time to go home, we couldnt believe they were actually going to let us take her home with us! We were so excited and scared all at the same time. The adventures were right around the corner!

Christmas 2012Easter 2013

In April of 2013, our lives changed. Madilyn had her first seizure and was hospitalized at St. Francis Children's Hospital. They did multiple tests on her and delivered the diagnosis of, Tuberous Sclerosis Complex.

Tuberous sclerosis complex (TSC) is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism. (www.tsalliance.org)

The TS Alliance is a group of people dedicated to research and making the lives of those affected by this disease better.

Madilyn has tumors on her brain, heart and skin. She has to have frequent EEGs, Echocardiograms, and sedated MRIs. And has a team of 6 doctors that reside within Oklahoma and Texas.

In July of 2014, we traveled to Washington D.C and attended the World TS Conference. We met with thousands of other families and listened to some of the worlds best doctors talk about new technologies coming to the TS world. We had such a great weekend!!From the day she was born we knew she was meant for something great. We however didnt know how big that something would be. It is a honor to fight along her side. As the TS Alliance says, We will give everything but up!